We need action from government, not just words: My Neuro Survey 2024 results

Over 10,000 people including adults, children and carers took part in My Neuro Survey 2024. The message is clear. Too many people affected by neurological conditions still can’t get the healthcare they need.

In The Neurological Alliance’s national neurological survey, My Neuro Survey, just 1 in 3 people said the healthcare they receive meets their needs. There are opportunities to change this, but we need action from government now, not words.

My Neuro Survey 2024/25 findings

The results of My Neuro Survey 2024, the largest patient experience survey of its kind, show that, in England:

  • Just 1 in 3 respondents felt the health care they receive meets their needs.
  • Almost half (48%) do not feel supported by the health system.
  • Over a quarter of people couldn’t access a neurologist or specialist nurse in the past year.
  • More than 4 in 10 said they don’t know who to contact between appointments.
  • Three quarters said their condition impacts their ability to work or study; 6 in 10 are struggling financially.

The situation is especially stark when it comes to mental health support:

  • 69% of people who needed neuropsychiatry services couldn’t access them
  • 62% couldn’t access neuropsychology
  • 48% were unable to access counselling

Despite the challenges, the survey also highlights the positive impact of good care when it is accessible. 72% of people said they felt comfortable speaking with healthcare professionals, and 57% reported that information was clearly explained.

Key recommendations

  • Tackle critical workforce shortages in neuroscience and associated specialties in the forthcoming workforce plan.
  • Ensure the NHS 10 year plan is supported by a specific implementation plan for services for people affected by neurological conditions.
  • Implement NHS guidance that seeks to ensuring no-one is turned away from mental health services due to their neurological diagnosis.
  • Build a health system architecture that provides much needed clinical leadership and delivers transformation of services for people affected by neurological conditions.
  • Draw from the extensive work undertaken within the NHS England national neuroscience transformation programme, National Neuro Advisory Group optimal clinical pathways of care and Getting It Right First Time neurology and neurosurgery programmes.
  • Unlock the potential of the UK Neuro Forum by providing dedicated, time-limited government funding to support its coordination and engagement activities.
  • Rethink and reverse planned cuts to the health and disability benefits system and ensure any changes do not negatively impact people affected by neurological conditions.

Read our reports

Download a summary of the key findings for adults, children and young people throughout the UK here.

Download the policy report here – more detail on the findings for England and our recommendations for change, based on these findings.

Download the landscape report here – further analysis with UK-wide data.

Download the technical report here – the background and rationale for the survey, its methodology, and the findings from the survey, including answers to every question.

Together, we’re calling on government to adopt our recommendations

We’ve sent an open letter to the Secretary of State for Health and Social Care, calling on him to adopt the recommendations for change in the policy report for England, based on the results of My Neuro Survey 2024. Over 3,000 people have signed the letter in a powerful statement to government: act now to improve  treatment, care and support for  people affected by neurological conditions, now and in the future.

The letter calls for the government to adopt recommendations from our England policy report, including:

  • Government funding  for the UK Neuro Forum
  • Specific provision for services for people affected by neurological conditions in the delivery of the NHS 10 year plan
  • The forthcoming workforce plan to tackle critical workforce shortages in neuroscience and associated specialties.

We’ve also formally requested a meeting with the Secretary of State for Health and Social Care.

Read the open letter

Wait. I’m looking for more detail on the survey results for Scotland, Wales, Northern Ireland or the Republic of Ireland

My Neuro Survey was delivered in collaboration with Neurological Alliances across the UK and Republic of Ireland – Wales Neurological Alliance, Neurological Alliance of Scotland, Northern Ireland Neurological Charities Alliance (niNCA) and the Neurological Alliance of Ireland.

You can download a summary of the key findings for adults, children and young people throughout the UK here.

Download the landscape report here for further analysis with UK-wide data, including results from Scotland, Wales and Northern Ireland.

Visit the website for your national alliance to find out more about how they’re working to improve workforce and services for everyone affected by neurological conditions: Wales Neurological Alliance, Neurological Alliance of Scotland, Northern Ireland Neurological Charities Alliance (niNCA) and The Neurological Alliance of Ireland.